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Bright Futures: Living with Down Syndrome

When you’re caring for children and young people with Down Syndrome, they are likely to need help with their day-to-day life. They will have differing levels of learning disabilities.

No two people are the same, so the assistance they need will vary for each person. Caring for Down Syndrome children can be complex, because their needs are also likely to change as they get older.

There is certainly no “one size fits all” guide to dealing with Down Syndrome, but health experts have issued guidance to help parents and carers navigate each day.

Treating Down Syndrome is a combination of good healthcare, liaising with health professionals and learning from your own experience – you will know what’s best for your child.


What can you do to help?


Experts at the NHS say you should always speak calmly and clearly so your child can learn from you. When they achieve something new, praise them, as you would any child.

Play should include singing songs and reading books together to help them learn words and sounds.

There are specific aids to help them communicate. NHS guidance suggests contacting Signalong, a charity that helps people with communication difficulties, for advice.

It also recommends using Makaton, the communication tool that comprises signs, speech and symbols to help people with learning disabilities communicate.

The Picture Exchange Communication System (PECS) is another resource that is recommended by the NHS. It enables people with no or few communication abilities to use pictures.

It can be better to actually show the child how to do something, rather than just instructing them, as they can find this easier to understand.

Children with Down Syndrome thrive when they have a set routine to help them feel settled. This should include routines for getting up, getting dressed, mealtimes and getting ready for bed.

Encourage your child to be active and healthy by taking part in activities with them, such as going for a walk, or going to the park.

The Down’s Syndrome Association has plenty of resources available on its website to give parents and care givers more ideas.

You must also look out for even small changes in behaviour or mood. A child with Down Syndrome may be feeling unwell, but possibly won’t be able to tell you if something is wrong.

Always take them for regular health checks for their eyesight, hearing and general health.


Beds for down syndrome


When it comes to sleeping, Down Syndrome children must have a good sleep routine. It is essential to their overall health and wellbeing.

Specialist beds for people with Down Syndrome can help them to have a safe and refreshing night’s sleep. Some are specifically designed for children and young people with Down Syndrome, such as the junior care bed and the electric nursing bed.

Studies show children and young people with Down Syndrome can have sleeping problems, with 40% of seven to 11-year-olds finding it difficult to settle down at bedtime and 51% of them waking during the night. Many relate to physical and breathing-related issues.

Your choice of bed should depend on their individual requirements. It is imperative to discuss their needs with an expert, so you make the correct choice.


Things you should not do


You must never patronise or talk down to teenagers with Down Syndrome. Treat them as you would anyone else of their age.

They will be going through hormonal and physical changes at the same time as every other teen. It’s a time when they will feel like doing more themselves.

If your child does become agitated, there are various calming techniques recommended by health experts to defuse the situation. Strategies such as listening to music, spending time with a pet, or simply encouraging the child to take deep breaths are the most popular techniques.

Some may wish to spend more time in their own personal space, like their bedroom. This is a time for both the parents or carer and the school to ensure the young person has a greater knowledge of safe behaviour.


Christmas and Down Syndrome children


Christmas can be a hard time for young people with Down Syndrome, as there will be significant changes in routine. The long break from school, people visiting, Christmas decorations and new foods can all cause some trepidation. Although it can be exciting, it can also be an overwhelming time.

Even if relatives are coming for the festive period, try to keep some kind of routine in place for your child, especially with mealtimes and bedtime.

If they want familiar food, make sure it’s available and ready for them to eat. If it all becomes too much, it’s perfectly acceptable to let them go to their room for a break. Go with them and make sure they feel secure and comfortable, especially if you have a lot of guests or noise.

If you’re part of a local group for families with a Down Syndrome child, it’s worth checking if they are organising any Christmas activities. Craft workshops to make Christmas cards, small gifts or decorations are always popular.

For more information on Bright Futures: Living with Down Syndrome talk to Kinderkey Healthcare Ltd

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